My name is Sandi and I have a 16month old son
who has been diagnosed deletion positive. We are
starting a research study this week at Children's
Hospital in Houston Texas. I am curious if any of
your children are also enrolled in the protocol, and
if so what has your experience been like? They
are using folate and betaine to improve brain development
etc. Also - I would like to hear from any other parents
with young children with AS.

Many Thanks,
Sandi


[Non-text portions of this message have been removed]

Hi Sandy,

My name is Kathy, welcome to the group. Are you also on the other AS list? That
is a big one with lots of good advice. There is also a chat available to you on
Wednesday nights that has parents with AS on it. It is just a group for Angelman
famililes. Some have young children and a few have older children. Let me know
if you want to attend and I can send you an invitation. Do you get any respite
care, or children's special health care?

Take care!

Kathy mom to Mandy 10 Angie 4 Rocky 13 months all AS, ube3a

http://www.geocities.com/candlecrazy_1999/girlswebpage.html





---------------------------------
Do You Yahoo!?
Yahoo! Health - your guide to health and wellness

[Non-text portions of this message have been removed]

Hi Kathy,

  Thanks for the reply. What is the name of the other
group? I am definitely interested in the chat on Wed.
evenings. I am in the process of getting respite through
ECI. I just got the application today. We don't recieve
any children's special health care. Do you?
Are you involved in the research study at Children's
Hospital in Houston, TX or know anyone who is?
I look forward to hearing back from.....

Thanks,
Sandi  mom to Brandon 16months deletion positive

Hi Sandy,

I sent the invitation to the chat, it should come from MSN communities. Yes both
my angels get children's special health care. I can't say it helps out to much,
but it is always good to have a back up. I"m not involved in the trials at
Baylor, and don't know anyone who is.

Talk soon!

Kathy mom to Mandy 10, Angie 4, Rocky 13 months, all AS Ube3a





---------------------------------
Do You Yahoo!?
Yahoo! Shopping - Mother's Day is May 12th!

[Non-text portions of this message have been removed]

Hi my name is Kelley  and my daughter is 5, with deletion positive. I Would
like to know more about the research that is going on. I am intersested in any
type of research. Please let me know of any others. Thanks Kelley Smith
   Eric Butzow <htbeat@...> wrote: My name is Sandi and I have a 16month
old son
who has been diagnosed deletion positive. We are
starting a research study this week at Children's
Hospital in Houston Texas. I am curious if any of
your children are also enrolled in the protocol, and
if so what has your experience been like? They
are using folate and betaine to improve brain development
etc. Also - I would like to hear from any other parents
with young children with AS.

Many Thanks,
Sandi


[Non-text portions of this message have been removed]


Yahoo! Groups SponsorADVERTISEMENT

To unsubscribe from this group, send an email to:
familiesofangelmansyndrome-unsubscribe@yahoogroups.com



Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



---------------------------------
Do You Yahoo!?
LAUNCH - Your Yahoo! Music Experience

[Non-text portions of this message have been removed]

Hi Kelley,
Welcome to the group. My son is almost 10 and deletion positive also.
I have not been involved in any of the research as of yet, so I can't
really help you out there, but I wanted to wish you the best of luck
with it and hope that you will keep us updated.

Angel hugs,
Wendy
Matthew,9, del+
Hobart Indiana

Hello,

This email message is a notification to let you know that
a file has been uploaded to the Files area of the familiesofangelmansyndrome
group.

   File        : / Click Here!
   Uploaded by : polazituerasz <polazituerasz@...>
   Description : Look at all these different credit cards you can get! Good, bad,
or no credit.

You can access this file at the URL

http://groups.yahoo.com/group/familiesofangelmansyndrome/files/%20Click%20Here%2\
1

To learn more about file sharing for your group, please visit

http://help.yahoo.com/help/us/groups/files

Regards,

polazituerasz <polazituerasz@...>

Hi,
I am a special educator of seventeen years. This year will be my
first year teaching children in a "Life Skills" class. That's what
we call the class in TN.
I have a darling student with this condition. I have already contacted
the Angelman Syndrome Foundation. They sent me their information
pack. A lot of info.
  If any of you have ideas on how to work with this child let me know.
I have been working with her on basic skills (attention, focusing
her to work with me, hand over hand activities). I would like her
to return to feeding herself with finger foods. For some reason,
last year, no one really worked with her, except for the class nurse
and assistant.
She responds to her name, responds to food.
As the info said in the packet, receptive language is better than
expressive. She does express her needs vocally at times.
Looking forward to hearing from your.

Hello,

It's great to hear a teacher looking for advice! I'm sure the parents appreciate
you taking the time.

You don't say what age this child is you work with, so i'll start from the
beginning. It is true that their receptive skills are better than their
expressive, and i am by no means an expert on educating children with Angelman
Syndrome, this is from experience with an AS child as a parent.

One of the most important things is self-help skills. Many kids can learn simple
household chores if they are taught. Hand over hand is a great way to teach sign
language, or feeding skills if the children are receptive to it. My 10 year old
angel was very receptive to hand over hand where feeding is concerned. My 5 year
old angel who still doesn't feed herself, isn't receptive to it at all. I use a
more straight forward approach with her. If I give her something that isn't
finger food. She doesn't get the meal until she holds her spoon and attempts to
spoon feed. This is can be very frustrating, but i have heard from other parents
this worked for them.

Usually attention span is very little, as i'm sure you have read. My 10 year old
angel still won't attend to a task for more than 10 minutes, unless it's water,
sand, plastic, or sticker related. Alot of children can learn simple classroom
jobs, such as emptying the trash, wiping down tables, or stacking chairs. This
gives them a sense of responsibility and alot of Angel's like to "help" usually.

If i can help you any way just let me know. My e-mail address is
Candlecrazy_1999@...  Good luck!



Kathy
Mandy 10, Angie 4, Rocky 13 months, all AS, ube3a

Http://www.geocities.com/candlecrazy_1999/girlswebpage.html



---------------------------------
Do You Yahoo!?
Yahoo! Finance - Get real-time stock quotes

[Non-text portions of this message have been removed]

I am a new member with an autistic son.  A local geneticist has been
recommending to parents with autistic kids that they be tested for
mecp2 (Rett syndrome), 22q11.2, FISH studies of chromosone tips and
mpcr studies of 15q (Angelman's syndrome).  I have heard that he
recommends these tests because the listed genetics defects have been
found in some autistic kids.  We have an appointment soon and I am
trying to prepare beforehand.

I have searched the archives of autism lists at yahoogroups and from
what I could find, some of the gene defects listed above are not
specific to any one disorder.  Also, what the genes above are
responsible for in the body is not known.  I was wondering if the
above testing will provide useful information in our case?  Does
knowing a person has one of the genetic defects above give direction
to therapies or anything else useful?  Thanks.

Dave

Dave,

My daughter is Clinically Diagnosed with Angelman Syndrome.  For us,
that makes not difference in how we work with her.  She is high
functioning and is learning more everyday.  I think the Dx gave her a
label and that label gave her a few services that she may not have
gotten otherwise.
From my experience, that clinical dx didn't change Jessie and she
would be the same regardless.
Now if there was gene therapy, that would be a different story.
Isolating the gene would make a difference.

Good Luck in your quest,

Winna

we have just find out i'm preg and i have a  son that has angelman
syndrom can you have another one with angelmanssydrome.

Hi,

What type of AS does your son have? If you provide more information I would be
glad to answer your question





Kathy
Mandy 11, Angie 5, Rocky 19 months, all AS, ube3a

Http://www.geocities.com/candlecrazy_1999/girlswebpage.html



---------------------------------
Do you Yahoo!?
Yahoo! Mail Plus - Powerful. Affordable. Sign up now

[Non-text portions of this message have been removed]

Hi:

We are the parents of a 21 month old girl who at this point has a
clinical diagnosis of Angelman's.  Her chromosone FISH test came
back normal.  I've found research that suggests more detailed
analysis testing that I'm trying to get our neurologist/genetist to
order.  Our daughter has:  1) infantile spasms/intractable seizures,
2) delayed myelination, 3) retinitis pigmentosa, 4) hypotonia, 5)
very widely spaced teeth, 6) a happy disposition, 7) smiles/laughs
frequently, 8) moves arms/legs jerkily (as if on a string....), does
this all sound very familiar?  She is over medicated on seizure
meds.  We've been thru ACTH.  We are now trying the ketogenic diet.
It may be helping.  SHe is waking up more, babbling more, and is
more interactive.  She is absolutely a joy to me, but I am going
crazy without a definitive diagnosis.  THey just keep saying
cerebral palsy of undetermined etiology despite an exhaustive
workup.  She has a normal chromosone analysis.  I'm very interested
in the testing that the parent in Texas was going thru.  Please tell
me more.  I'm truly looking forward to meeting familes with AS.  If
there are future conferences, please let us know.  We'll try hard to
attend.  Thank you so much!  Duane and Stacey Vogele

My name is Meagan and our Angel is Phoebe. She is 14 months, and
although we didn't have any trouble with our diagnosis, the symptoms
you describe do seem familiar. Does she tongue thrust? Is she bearing
any weight? Feeding issues? Sleep problems? What state are you in
because I can recommend specialists in Oregon. I know a family in WA
who didn't get a diagnosos until age 24, and one in Salem that had to
wait until age 10. If you'd like to talk to them I can connect you. I
worry about the ketogenic diet in one so young, but I haven't had to
make that decision yet, as we haven't seen any seizures yet. We dealt
with lots of hospital time and surgery for SEVERE failure to thrive,
had a stomach wrap, and a g-tube put in, happy little girl who's had
to deal with a lot of pain. I thought we might have a lot to talk
about because our kids are both so young.
For anyone else out there, got any advise on keeping the food in the
child? She spits everything out and the insurance won't pay for the
special formula, so we've got to get her off the g-tube, but she's
just not gaining weight. She's been hovering at 15 pounds for 2
months, more volume gives her a stomach ache, and we're feeding every
2-3 hrs, AROUND THE CLOCK.


--- In familiesofangelmansyndrome@yahoogroups.com, "momonaquest
<SVOGELE@A...>" <SVOGELE@A...> wrote:
> Hi:
>
> We are the parents of a 21 month old girl who at this point has a
> clinical diagnosis of Angelman's.  Her chromosone FISH test came
> back normal.  I've found research that suggests more detailed
> analysis testing that I'm trying to get our neurologist/genetist to
> order.  Our daughter has:  1) infantile spasms/intractable
seizures,
> 2) delayed myelination, 3) retinitis pigmentosa, 4) hypotonia, 5)
> very widely spaced teeth, 6) a happy disposition, 7) smiles/laughs
> frequently, 8) moves arms/legs jerkily (as if on a string....),
does
> this all sound very familiar?  She is over medicated on seizure
> meds.  We've been thru ACTH.  We are now trying the ketogenic
diet.
> It may be helping.  SHe is waking up more, babbling more, and is
> more interactive.  She is absolutely a joy to me, but I am going
> crazy without a definitive diagnosis.  THey just keep saying
> cerebral palsy of undetermined etiology despite an exhaustive
> workup.  She has a normal chromosone analysis.  I'm very interested
> in the testing that the parent in Texas was going thru.  Please
tell
> me more.  I'm truly looking forward to meeting familes with AS.  If
> there are future conferences, please let us know.  We'll try hard
to
> attend.  Thank you so much!  Duane and Stacey Vogele

A formal diagnosis has been a blessing for us. It helps us procure
services, allows us to get access to specific info and support
groups, has gotten us publicity that has helped pay for thereapy, and
has given us a mental handhold. I recommend getting as detailed a
genetic dx as possible. You never know: someday specific thereapies
might be available, and I imagine already having the dx could save
valuable time.

--- In familiesofangelmansyndrome@yahoogroups.com, "Dave Adams"
<adamsdp@c...> wrote:
> I am a new member with an autistic son.  A local geneticist has
been
> recommending to parents with autistic kids that they be tested for
> mecp2 (Rett syndrome), 22q11.2, FISH studies of chromosone tips and
> mpcr studies of 15q (Angelman's syndrome).  I have heard that he
> recommends these tests because the listed genetics defects have
been
> found in some autistic kids.  We have an appointment soon and I am
> trying to prepare beforehand.
>
> I have searched the archives of autism lists at yahoogroups and
from
> what I could find, some of the gene defects listed above are not
> specific to any one disorder.  Also, what the genes above are
> responsible for in the body is not known.  I was wondering if the
> above testing will provide useful information in our case?  Does
> knowing a person has one of the genetic defects above give
direction
> to therapies or anything else useful?  Thanks.
>
> Dave

Hi

Thanks for your note.  I'm sure we have a ton of stuff in common.  Our Tana
had her Nissen (Stomach wrap) at 9 mos for failure to thrive and reflux.
She was the "queen of pukers,"  according to the docs.  She had the G-tube
at the same time.  She developed post op infections at the surgical
incision, reacted to the stitches.  Her nissen was redone about 3 months
later to a half wrap because she couldn't get anything down.  We live in St.
Paul, MInnesota.  I'd love very much to meet other Angel families.  We are
about to travel down to Mayo for further testing in another month-6 weeks.

I'm so sorry to hear about your little girl.  Why isn't your insurance
paying for the formula?  Are you on a specialized one for her, or could you
get one that requires prescription and then they would have to cover it?
Our little one will never eat again.  Since the nissen was too tight, she
won't allow more than a drop of water in her mouth.  We tried everything,
sweets, salt, pudding, popcicles, ice cream, watery baby cereal.  She just
doesn't want to eat and hates it.  Thus I've resigned myself to g-tube life.
She may go off of the keto diet in 3 more months bec. there is NO
improvement!  In fact, seizures are continuing to increase!  That really
stinks!  We are running out of seizure options.  We have tried every seizure
med out there (except vigabatrin (SP?).

Thanks for your note.

Stacey
----- Original Message -----
From: <familiesofangelmansyndrome@yahoogroups.com>
To: <familiesofangelmansyndrome@yahoogroups.com>
Sent: Wednesday, February 19, 2003 4:13 AM
Subject: [Families of Angelman Syndrome] Digest Number 14


> To unsubscribe from this group, send an email to:
> familiesofangelmansyndrome-unsubscribe@yahoogroups.com
>
>
> ------------------------------------------------------------------------
>
> There are 2 messages in this issue.
>
> Topics in this digest:
>
>       1. Re: new member
>            From: "rocketwatts2003 <rocketwatts2003@...>"
<rocketwatts2003@...>
>       2. Re: New member - is genetic testing useful?
>            From: "rocketwatts2003 <rocketwatts2003@...>"
<rocketwatts2003@...>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 1
>    Date: Tue, 18 Feb 2003 19:32:17 -0000
>    From: "rocketwatts2003 <rocketwatts2003@...>"
<rocketwatts2003@...>
> Subject: Re: new member
>
> My name is Meagan and our Angel is Phoebe. She is 14 months, and
> although we didn't have any trouble with our diagnosis, the symptoms
> you describe do seem familiar. Does she tongue thrust? Is she bearing
> any weight? Feeding issues? Sleep problems? What state are you in
> because I can recommend specialists in Oregon. I know a family in WA
> who didn't get a diagnosos until age 24, and one in Salem that had to
> wait until age 10. If you'd like to talk to them I can connect you. I
> worry about the ketogenic diet in one so young, but I haven't had to
> make that decision yet, as we haven't seen any seizures yet. We dealt
> with lots of hospital time and surgery for SEVERE failure to thrive,
> had a stomach wrap, and a g-tube put in, happy little girl who's had
> to deal with a lot of pain. I thought we might have a lot to talk
> about because our kids are both so young.
> For anyone else out there, got any advise on keeping the food in the
> child? She spits everything out and the insurance won't pay for the
> special formula, so we've got to get her off the g-tube, but she's
> just not gaining weight. She's been hovering at 15 pounds for 2
> months, more volume gives her a stomach ache, and we're feeding every
> 2-3 hrs, AROUND THE CLOCK.
>
>
> --- In familiesofangelmansyndrome@yahoogroups.com, "momonaquest
> <SVOGELE@A...>" <SVOGELE@A...> wrote:
> > Hi:
> >
> > We are the parents of a 21 month old girl who at this point has a
> > clinical diagnosis of Angelman's.  Her chromosone FISH test came
> > back normal.  I've found research that suggests more detailed
> > analysis testing that I'm trying to get our neurologist/genetist to
> > order.  Our daughter has:  1) infantile spasms/intractable
> seizures,
> > 2) delayed myelination, 3) retinitis pigmentosa, 4) hypotonia, 5)
> > very widely spaced teeth, 6) a happy disposition, 7) smiles/laughs
> > frequently, 8) moves arms/legs jerkily (as if on a string....),
> does
> > this all sound very familiar?  She is over medicated on seizure
> > meds.  We've been thru ACTH.  We are now trying the ketogenic
> diet.
> > It may be helping.  SHe is waking up more, babbling more, and is
> > more interactive.  She is absolutely a joy to me, but I am going
> > crazy without a definitive diagnosis.  THey just keep saying
> > cerebral palsy of undetermined etiology despite an exhaustive
> > workup.  She has a normal chromosone analysis.  I'm very interested
> > in the testing that the parent in Texas was going thru.  Please
> tell
> > me more.  I'm truly looking forward to meeting familes with AS.  If
> > there are future conferences, please let us know.  We'll try hard
> to
> > attend.  Thank you so much!  Duane and Stacey Vogele
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 2
>    Date: Tue, 18 Feb 2003 19:39:05 -0000
>    From: "rocketwatts2003 <rocketwatts2003@...>"
<rocketwatts2003@...>
> Subject: Re: New member - is genetic testing useful?
>
> A formal diagnosis has been a blessing for us. It helps us procure
> services, allows us to get access to specific info and support
> groups, has gotten us publicity that has helped pay for thereapy, and
> has given us a mental handhold. I recommend getting as detailed a
> genetic dx as possible. You never know: someday specific thereapies
> might be available, and I imagine already having the dx could save
> valuable time.
>
> --- In familiesofangelmansyndrome@yahoogroups.com, "Dave Adams"
> <adamsdp@c...> wrote:
> > I am a new member with an autistic son.  A local geneticist has
> been
> > recommending to parents with autistic kids that they be tested for
> > mecp2 (Rett syndrome), 22q11.2, FISH studies of chromosone tips and
> > mpcr studies of 15q (Angelman's syndrome).  I have heard that he
> > recommends these tests because the listed genetics defects have
> been
> > found in some autistic kids.  We have an appointment soon and I am
> > trying to prepare beforehand.
> >
> > I have searched the archives of autism lists at yahoogroups and
> from
> > what I could find, some of the gene defects listed above are not
> > specific to any one disorder.  Also, what the genes above are
> > responsible for in the body is not known.  I was wondering if the
> > above testing will provide useful information in our case?  Does
> > knowing a person has one of the genetic defects above give
> direction
> > to therapies or anything else useful?  Thanks.
> >
> > Dave
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
>
>
> Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>
>


---
Outgoing mail is certified Virus Free.
Checked by AVG anti-virus system (http://www.grisoft.com).
Version: 6.0.449 / Virus Database: 251 - Release Date: 1/27/2003

Hi everyone....just a quick note....when Matt was just months old he
was not gaining weight either....the doctor had us put Karo syrup in
his food/drink...it's been a while, but as I recall it was like a
tablespoonful with each meal...either in the cereal or drink....check
with your doctor before trying this, but it came from a doc that has
dealt with Angelman kids before.  Worked for Matt and he started
gaining regularly...not as fast as other kids, but at least it was
something...

Take care and don't forget to check with your doc first...

Wendy mother of Matthew, 10, del+

We just found out our very good friends have had their 2 1/2 year old
son diagnosed.  We live in CO and they're in TX.  Any ideas on how
best to show support, how to help them through the initial shock of
their discovery, as well as support long term?

We are still new in the ball game and sometimes, you just live day to day.
My best advice for long-distance friends, is to show you support and/or
care. Call or email to let them know you are there.  Offer to do any
research that they may not have time to do because they are busy with caring
for their child.  Just call once in awhile to let them vent.  At first the
grief is over-powering.  Both the child's life and your own pass before your
eyes.  All the dreams you had for your child vaporize.  At least they do
when the diagnosis actually sinks in, and depending on the severity of how
the child is affected.  After a time, the pain seems to lessen as I focused
on my child and her medical care and contuing to search for more medical
knowledge and answers.  Now I deeply love our daughter and I understand that
there is some purpose for her coming to us.  I always appreciate hearing
from others how special parents of handicapped children are.  Some people
are insulted when they are told, "God chose you to be the parents."  I never
have been offended, I thought it was a nice idea that for some strange
reason, he picked me to be the best Mom I can for our disabled daughter.
Our child has made us both better parents, more understanding and patient,
and a stronger marriage.  Something we didn't expect.  My best friends email
me and/or check in with us.  They are still willing to come and visit when
they can, and not act afraid of our daughter.  Hope this helps.

Stacey Vogele
Mother to 22 month old Tana, clinical angelman's, severely affected
----- Original Message -----
From: <familiesofangelmansyndrome@yahoogroups.com>
To: <familiesofangelmansyndrome@yahoogroups.com>
Sent: Tuesday, March 04, 2003 4:14 AM
Subject: [Families of Angelman Syndrome] Digest Number 17


> To unsubscribe from this group, send an email to:
> familiesofangelmansyndrome-unsubscribe@yahoogroups.com
>
>
> ------------------------------------------------------------------------
>
> There is 1 message in this issue.
>
> Topics in this digest:
>
>       1. Friend of newly diagnosed
>            From: "lshoveinbrown <lshoveinbrown@...>"
<lshoveinbrown@...>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 1
>    Date: Mon, 03 Mar 2003 19:14:41 -0000
>    From: "lshoveinbrown <lshoveinbrown@...>"
<lshoveinbrown@...>
> Subject: Friend of newly diagnosed
>
> We just found out our very good friends have had their 2 1/2 year old
> son diagnosed.  We live in CO and they're in TX.  Any ideas on how
> best to show support, how to help them through the initial shock of
> their discovery, as well as support long term?
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
>
>
> Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>
>


---
Outgoing mail is certified Virus Free.
Checked by AVG anti-virus system (http://www.grisoft.com).
Version: 6.0.449 / Virus Database: 251 - Release Date: 1/27/2003

Stacey-
Your wisdom, kindness and strength bring a new braveness to others who are
recently introduced AS.  Thank you very much for writing me back and please let
me know if there is any other way you think I could be helpful.
One of the things I've been interested in researching is respite care to give
the young couple a night out someday...any ideas?
Thanks again,
Laura
  Stacey Vogele <SVOGELE@...> wrote:We are still new in the ball game and
sometimes, you just live day to day.
My best advice for long-distance friends, is to show you support and/or
care. Call or email to let them know you are there.  Offer to do any
research that they may not have time to do because they are busy with caring
for their child.  Just call once in awhile to let them vent.  At first the
grief is over-powering.  Both the child's life and your own pass before your
eyes.  All the dreams you had for your child vaporize.  At least they do
when the diagnosis actually sinks in, and depending on the severity of how
the child is affected.  After a time, the pain seems to lessen as I focused
on my child and her medical care and contuing to search for more medical
knowledge and answers.  Now I deeply love our daughter and I understand that
there is some purpose for her coming to us.  I always appreciate hearing
from others how special parents of handicapped children are.  Some people
are insulted when they are told, "God chose you to be the parents."  I never
have been offended, I thought it was a nice idea that for some strange
reason, he picked me to be the best Mom I can for our disabled daughter.
Our child has made us both better parents, more understanding and patient,
and a stronger marriage.  Something we didn't expect.  My best friends email
me and/or check in with us.  They are still willing to come and visit when
they can, and not act afraid of our daughter.  Hope this helps.

Stacey Vogele
Mother to 22 month old Tana, clinical angelman's, severely affected
----- Original Message -----
From: <familiesofangelmansyndrome@yahoogroups.com>
To: <familiesofangelmansyndrome@yahoogroups.com>
Sent: Tuesday, March 04, 2003 4:14 AM
Subject: [Families of Angelman Syndrome] Digest Number 17


> To unsubscribe from this group, send an email to:
> familiesofangelmansyndrome-unsubscribe@yahoogroups.com
>
>
> ------------------------------------------------------------------------
>
> There is 1 message in this issue.
>
> Topics in this digest:
>
>       1. Friend of newly diagnosed
>            From: "lshoveinbrown <lshoveinbrown@...>"
<lshoveinbrown@...>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
> Message: 1
>    Date: Mon, 03 Mar 2003 19:14:41 -0000
>    From: "lshoveinbrown <lshoveinbrown@...>"
<lshoveinbrown@...>
> Subject: Friend of newly diagnosed
>
> We just found out our very good friends have had their 2 1/2 year old
> son diagnosed.  We live in CO and they're in TX.  Any ideas on how
> best to show support, how to help them through the initial shock of
> their discovery, as well as support long term?
>
>
>
> ________________________________________________________________________
> ________________________________________________________________________
>
>
>
> Your use of Yahoo! Groups is subject to http://docs.yahoo.com/info/terms/
>
>


---
Outgoing mail is certified Virus Free.
Checked by AVG anti-virus system (http://www.grisoft.com).
Version: 6.0.449 / Virus Database: 251 - Release Date: 1/27/2003


Yahoo! Groups SponsorADVERTISEMENT

To unsubscribe from this group, send an email to:
familiesofangelmansyndrome-unsubscribe@yahoogroups.com



Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



---------------------------------
Do you Yahoo!?
Yahoo! Tax Center - forms, calculators, tips, and more

[Non-text portions of this message have been removed]

Hi Laura,

I guess I missed the first post on this, but if you are interested in
researching respite care for your friend, let me know what state they live in
and I can get you the info. Not only is respite care available, but there are
state waiver programs, and extra insurance to pay for equipment and such
available if they qualify.

Again, let me know where your friend lives and I will post the links





Kathy
Mandy 11, Angie 5, Rocky 19 months, all AS, ube3a

Http://www.geocities.com/candlecrazy_1999/girlswebpage.html



---------------------------------
Do you Yahoo!?
Yahoo! Tax Center - forms, calculators, tips, and more

[Non-text portions of this message have been removed]

Hi Kathy-
Thanks so much for your encouraging message.  My friends live in Houston, TX. 
I'm sure they will be excited to hear about your information.
Many thanks,
Laura
  Kathy Leonard <candlecrazy_1999@...> wrote:
Hi Laura,

I guess I missed the first post on this, but if you are interested in
researching respite care for your friend, let me know what state they live in
and I can get you the info. Not only is respite care available, but there are
state waiver programs, and extra insurance to pay for equipment and such
available if they qualify.

Again, let me know where your friend lives and I will post the links





Kathy
Mandy 11, Angie 5, Rocky 19 months, all AS, ube3a

Http://www.geocities.com/candlecrazy_1999/girlswebpage.html



---------------------------------
Do you Yahoo!?
Yahoo! Tax Center - forms, calculators, tips, and more

[Non-text portions of this message have been removed]


Yahoo! Groups SponsorADVERTISEMENT

To unsubscribe from this group, send an email to:
familiesofangelmansyndrome-unsubscribe@yahoogroups.com



Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



---------------------------------
Do you Yahoo!?
Yahoo! Tax Center - forms, calculators, tips, and more

[Non-text portions of this message have been removed]

Hi Laura,

Sorry it took me so long to respond to this,,, i've been a little busy but here
are the link.

http://www.mhmr.state.tx.us/default.html

This will explain the services and let you know what is available for your
friend. I didn't look over this site but it should have what is called the
Medicaid Waiver Program. If you friend has any questions i can connect her with
a local person in her area. Do you know if she is a member of the Angelman
Syndrome Foundation?

Remember, as a friend of this person sometimes when she calls you she just wants
someone to listen. Your a great friend to be checking into this for her.

Let me know if you have any questions or i can help you or your friend in any
way.





Kathy
Mandy 11, Angie 5, Rocky 19 months, all AS, ube3a

Http://www.geocities.com/candlecrazy_1999/girlswebpage.html



---------------------------------
Do you Yahoo!?
Yahoo! Tax Center - forms, calculators, tips, and more

[Non-text portions of this message have been removed]

Thank you, Kathy!  I forwarded the information to my friends and really
appreciate you taking the time to be so helpful.
Bless you and your family!
Laura
  Kathy Leonard <candlecrazy_1999@...> wrote:
Hi Laura,

Sorry it took me so long to respond to this,,, i've been a little busy but here
are the link.

http://www.mhmr.state.tx.us/default.html

This will explain the services and let you know what is available for your
friend. I didn't look over this site but it should have what is called the
Medicaid Waiver Program. If you friend has any questions i can connect her with
a local person in her area. Do you know if she is a member of the Angelman
Syndrome Foundation?

Remember, as a friend of this person sometimes when she calls you she just wants
someone to listen. Your a great friend to be checking into this for her.

Let me know if you have any questions or i can help you or your friend in any
way.





Kathy
Mandy 11, Angie 5, Rocky 19 months, all AS, ube3a

Http://www.geocities.com/candlecrazy_1999/girlswebpage.html



---------------------------------
Do you Yahoo!?
Yahoo! Tax Center - forms, calculators, tips, and more

[Non-text portions of this message have been removed]


Yahoo! Groups SponsorADVERTISEMENT

To unsubscribe from this group, send an email to:
familiesofangelmansyndrome-unsubscribe@yahoogroups.com



Your use of Yahoo! Groups is subject to the Yahoo! Terms of Service.



---------------------------------
Do you Yahoo!?
Yahoo! Tax Center - forms, calculators, tips, and more

[Non-text portions of this message have been removed]

www.geocities.com/angelman942002/index.html

My name is Jamie, I have two kids, Amber who will be 5 in August and
Jacob who will be 3 later this month. We live in Georgia. I am
hoping to find a doctor that is knowledgeable about A.S.  in the
area, if anyone knows of one I would LOVE to know! Right now we know
that Amber has most of the symptoms of AS but we haven't had her
tested yet, I'm waiting to get in her neurologist. I have an appt
scheduled for June 11, I just hope they take me seriously when i go
there. Sometimes doctors dont like for the parents to suggest
something...they have huge egos or something.

Amber at this point, has no diagnoses other than dev. delay. They
say that all her tests are normal, ct, mri..etc... When she was two
I had a doctor say CP but since then other's have said no, it's not
cp. The only thing abnormal with her mri was that she has delayed
myelin, but the docs say that that really isn't a big deal. I have
heard that lots of kids with angelman syndrome have delayed myelin
too. Amber at this point, can not sit unassisted, she has no
balance, she uses a stander for weight bearing, she is trying to
crawl but she doens't do it like normal...she puts her head on the
ground and her hands behind her back and gets up on her knees. she
does the hand flapping, she is in constant motion, she has had
surgery for strabismas, she has tight heel cords which she wears
afo's for. The back of her head is kind of flat, she had kidney
reflux and gastroesophagel reflux both..has resolved...the kidney
reflux resolved around 18 months, and the gastro..resloved around 2-
3 years old.  She doesn't talk but babbles, she seems to understand
more things than she can express, she LOVES water, i think bathtime
is one of her favorite things along with swimming.  There are so
many more things that she has but I've already written a lot lol!
Anyway, i look forward to getting to know you all

Hi Jamie

welcome to the list! Have you been to the national ASF site? When you become a
member you recieve a list of professional's in your state. I looked on my list
and didn't see any Dr's in Georgia. However, the ASF's site also has state
contacts you can call. Alot of times they are helpful in finding Dr's that are
knowledgable. Many times they will refer you to their Dr.

If this doesn't work i can do some checking and see what is in your area,, if
anything.

Talk soon



Kathy
Mandy 11, Angie 5, Rocky 2 years old,

Http://www.geocities.com/candlecrazy_1999/girlswebpage.html




---------------------------------
Do you Yahoo!?
Free online calendar with sync to Outlook(TM).

[Non-text portions of this message have been removed]

I'll look there and see what I can find. Thank you for the welcome
and the info! :)

--- In familiesofangelmansyndrome@yahoogroups.com, Kathy Leonard
<candlecrazy_1999@y...> wrote:
> Hi Jamie
>
> welcome to the list! Have you been to the national ASF site? When
you become a member you recieve a list of professional's in your
state. I looked on my list and didn't see any Dr's in Georgia.
However, the ASF's site also has state contacts you can call. Alot
of times they are helpful in finding Dr's that are knowledgable.
Many times they will refer you to their Dr.
>
> If this doesn't work i can do some checking and see what is in
your area,, if anything.
>
> Talk soon
>
>
>
> Kathy
> Mandy 11, Angie 5, Rocky 2 years old,
>
> Http://www.geocities.com/candlecrazy_1999/girlswebpage.html
>
>
>
>
> ---------------------------------
> Do you Yahoo!?
> Free online calendar with sync to Outlook(TM).
>
> [Non-text portions of this message have been removed]

hello i have a just turned four year old daughter who is deletion
positive and just want to talk to other mothers of angels i feel so
alone at times. thanks
   i have a 4 a two and a newborn